Fund Medical Research So a Cure Can Be Found in Time for Children Battling
Total Page：16
File Type：pdf, Size：1020Kb
SANFILIPPO CHILDREN’S FOUNDATION - FUNDING RESEARCH, FINDING GEMS Our vision: Fund medical research so a cure can be found in time for children battling Sanfilippo today and those born with it tomorrow INTRODUCTION - OUR YEAR IN REVIEW HIGHLIGHTS WE’VE ACHIEVED TOGETHER Welcome • Partnership sealed with biotech, Abeona Therapeutics Inc As we conclude our second year of operation we are extremely encouraged in this (NASDAQ: ABEO ) to deliver clinical gene therapy trials time of change, expansion, philanthropic gestures and pioneering scientific progress. • Invested the first USD$200,000 with a total of USD$1m committed It’s been an extraordinary year for the Sanfilippo Children’s Foundation and we couldn’t (est. AUD$1.3m) towards first clinical research program have done it without the help of our exceptional community of supporters. We thought • Australian clinical team engaged to establish trial site in Australia we would show you some of what we have been up to. • Over 5,000 Facebook followers • Facebook total reach peaks at 40,000 in December 2014 • Over 6,000 supporters on our database WELCOME AND HIGHLIGHTS 02 • Foundation ambassador and Aussie singers band together to OUR MAJOR CONTRIBUTORS 04 launch dedicated song “HOPE FOR” CAMPAIGNS 06 • Extensive media coverage including 5 TV segments, 42 print OUR GEM FUNDRAISERS 08 articles and 12 radio interviews GEM QUOTES 11 • 5 major corporations donate over $100,000 in gift matching alone MEDIA COVERAGE 12 • Dedicated office space secured for the Foundation SPECIAL THANKS 14 • 40 community events raising over $100,000 A MESSAGE FROM OUR FOUNDER 15 • 100 peer-to-peer fundraising campaigns raising in excess of THE TEAM 16 $90,000 AMBASSADORS 17 • New fully integrated, interactive and supporter friendly website FAMILY STORIES 18 launched THE FINANCIALS 20 • Family-led “Hope for” campaigns combined raised more than THE RESEARCH 22 $140,000 • Welcomed 2 new ambassadors • Opened an online store and launched a line of SCF merchandise. This Year in Review document has been produced by professionals who have discounted and/or donated their time and services. We would like to thank designer Alex Moller and Lindfield Print and Copy Centre. 2 Sanfilippo Children’s Foundation Our year in review - 2015 3 THANK YOU TO OUR GEM FUNDRAISERS DICK SMITH FOODS The Sanfilippo Children’s Foundation won $50,000 from the Dick Smith Foods Foundation in its $1 Million Charity Breakthrough campaign. It is a heart-warming story of people power with SCF supporters taking more ‘selfies’ and MAJOR CONTRIBUTORS casting more votes than over 450 other eligible Australian charities over a six-month period. The SCF took out top gong in an initiative philanthropist and business man Dick Smith has called the “ultimate crowdfunding”. Sponsors and Events that helped raise funds in 2015 SANFILIPPO 1000 – BIG FEET FOR LITTLE FEET Proudly sponsored by Westpac, a highly motivated team of 7 runners relayed from Melbourne to Sydney and brought home a staggering $166,000 for the Sanfilippo Children’s Foundation, raising immeasurable awareness across both regional and metropolitan Victoria and New South Wales whilst exceeding all fundraising targets. A W EDWARDS The Sanfilippo Children’s Foundation was nominated by David Oliver as the recipient of the A W Edwards Charity Shield Day, a barefoot bowls event held in North Sydney in October. Thanks to the extraordinary support of A W Edwards, event sponsors and suppliers, the SCF was presented with a cheque for $90,000. KCA WALKATHON In 2014 Kimberly-Clark Australia (KCA) staff participated in a company and nation-wide KCA Walkathon. So successful was the event and relationship with the SCF, that the KCA team hit the pavement again in 2015 to raise additional funds. For two years running, KCA staff have participated in a series of fundraising events and activities. Thank you to HIDDEN GEMS GOLF DAY KCA employee Abby Phillips, who upon sharing the mission of the Foundation, has continued to rally the troops. With KCA matching, this year the event raised $82,500 towards our research programs, bringing the combined Due to the success of the inaugural event in 2014, this year golfers supported the SCF at the Hidden Gems total to $162,500 over the last 2 years. Golf Day at Cromer in Sydney. Golfers embraced the day with an Ambrose style event whilst partaking in wine tasting and competitions on course before retiring to the club for lunch and entertainment by ex-cricketer Kerry O’Keeffe. With thanks to our volunteer organiser, Stephanie Donohoe, the event raised $30,000. 4 Sanfilippo Children’s Foundation Our year in review - 2015 5 THANK YOU TO OUR GEM FUNDRAISERS HOPE FOR KYUSS March saw the launch of the Hope for Kyuss campaign, as the Harris and Johnson families rallied significant “HOPE FOR” CAMPAIGNS community support in regional Victoria. Along with two other children with Sanfilippo (Meckenzie Oelofsen and Skye Robson), Kyuss was featured in a Channel 9 news story about the plight of three families battling this devastating disease. The launch of the Hope for Kyuss campaign was also featured in the family’s local newspaper Successful family-led fundraising campaigns humanise the face of Sanfilippo Syndrome the Yarra Valley Leader and successful fundraising events have since included a ‘Sex Outta the City’ fundraiser, the ‘Ky Cup’ and the ‘Ky-T’ high tea fundraisers. Hope for Kyuss has raised over $93,000 this year. HOPE FOR ISLA & JUDE In December 2014, the Sanfilippo Children’s Foundation made national and international headlines with the launch of our Hope for Isla and Jude campaign and the release of the charity single This Woman’s Work. The cover of the Kate Bush song was produced by Foundation ambassador, Sébastien Izambard of Il Divo pop opera fame, together with Sony Music Australia. Sébastien visited Sydney to produce the single and united a stellar list of Australian artists including Darren Hayes, Natalie Bassingthwaighte, Ella Hooper, Diesel, David Campbell, Alex Lloyd, Christine Anu, Luke Steele (Empire of the Sun), Katy Steele (Little Birdy), Casey Donovan, Damien Leith, Nathaniel, Marlisa, and the Australian Children’s Choir. HOPE FOR MECKENZIE The charity anthem was accompanied by a film clip produced by film-maker, Jason van Genderen from Treehouse Creative. The campaign generated over $50,000 in donations and associated fundraising activity and Meckenzie recently turned 8 and to launch her Hope for campaign, Meckenzie’s family announced she has 8 the film clip has been viewed over 58,000 times. The campaign generated significant media coverage including birthday wishes - 1. Life, 2. Hope, 3. Treatment, 4. Help, 5. Cure, 6. Awareness, 7. Donate and to 8. Grow Old! 4 TV segments (Sky News, Channel 9 Mornings, Channel 9 Today Show and Channel 7 Morning Show), 10 print Meckenzie has had three articles appear in her local paper, The Moorabbin Leader, and also appeared in the articles and 6 radio interviews. Channel 9 news story filed by journalist and Foundation ambassador Sonia Marinelli. HOPE FOR SKYE HOPE FOR ALEC In February 2015, we introduced Skye Robson with the launch of the Hope for Skye campaign with Skye’s family Alec Morrice has Sanfilippo Type C, a rarer form of Sanfilippo affecting only 1 in every 1.5 million live births. joining the fight to raise funds. Their first #BlueSkyforSkye social media campaign on Rare Disease Day (28 Feb) Alec was diagnosed at the beginning of 2015. On the front foot in the fight to raise awareness about this was a great success with good traction, and generated a series of grassroots events in Ballarat, Victoria, and also in devastating disease, Alec’s family has been quick to get on-board and all money raised by the Hope for Alec Thailand, where Skye also has family. The Hope for Skye campaign has been profiled in four articles in theBallarat campaign will be put towards advancing research into Sanfilippo Type C. So far this year, over $11,000 has Courier and twice in The Miner Newspaper. This year, the Hope for Skye campaign has raised almost $40,000. been raised by Alec’s supporters. 6 Sanfilippo Children’s Foundation Our year in review - 2015 7 THANK YOU TO OUR GEM FUNDRAISERS OUR GEM FUNDRAISERS PUB 2 PUB FUN RUN In the spirit of “people-powered medicine”, BUNNING’S CAKE STALLS KY-T (HIGH TEA) FUNDRAISER MUAY THAI BOXING EVENT grassroots community support for the Sanfilippo two years running cause continues to grow and is paramount in realising our goals. In the last year, the SCF supported approximately 40 community events, raising over $100,000. Grassroot events have been held across the country by everyday people who we thank for their extraordinary support. We’ve had runners, walkers, bakers, riders, dieters, singers, head and beard shavers and even bag-pipers. There have been many events including: trivia, discos, Bunnings BBQs, Scottish dancing, endorsed golf days, band and karaoke nights, car boot sales, book fairs, car park collections, online auctions, gala dinners, street buskers, Christmas parties, cake stalls and group fun runs and walks. Peer-to-peer fundraising continues to grow with approximately 50 individuals fundraising for the SCF with a personalised fundraising page on the Foundation website. Fundraisers secured sponsorship via physical challenges including fun runs, marathons, obstacle courses and bike rides as well as challenges and dares such as giving up chocolate, wearing a wig for a month, and dying hair purple. DANCE FOR HOPE VIOLET DIAMOND BALL, SUN RUN SYDNEY TRIVIA SEX OUTTA THE CITY OPEN GARDEN FUNDRAISER two years running MELBOURNE two years running two years running FUNDRAISER 8 Sanfilippo Children’s Foundation Our year in review - 2015 9 A few words from some of our THANK YOU TO OUR GEM FUNDRAISERS GEM QUOTES Gem fundraisers about their involvement in the Sanfilippo Children’s Foundation.